Saturday, February 26, 2011

Did the Lightning Process cure your ME, then you didn't have ME in the first place

Letter by M:

"Dear Patrick, regarding the article that appeared in The Times titled "ME: Lightning cure or flash in the pan?" it is disgraceful that you are publicising the Lightning Process, when all other evidence is completely at odds to your personal views.

It is ironic that you have previously written award winning articles showing that claims by psychologists that they could cure homosexuals of their sexual preference are nonsense. How would you feel if people started reporting testimonials in the main stream media that they were "cured" of homosexuality by the Lightning Prcoess after just one day? With statements such as "I know it to be the truth it happened to me, they saved my life." Is there any more evidence for that repugnant suggestion than the equally repugnant claim that it is a cure for the terrible neurological illness known as ME? The LP is nothing more than standing on pieces of paper and saying STOP, do you really think that there is any support for the absurd claims that it can change bodily functions? And if they really could, surely it could also change a persons sexuality! As you tell us in your article, the power of the mind is very great.

The true story is that there is no scientific proof behind the claims, that therefore they are criminally illegal under the law. There are always believers, but belief does not make it true. It is a shame that an award winning journalist has been taken in by such a scheme. You report that after doing such nonsense you were cured... in one day. Yet if you had actually read the PACE trial, a controlled medical trial, that included CBT, not one ME patient was cured after doing the same kind of thing for over a year. (CBT comprises the very same STOP technique that is mis-sold as a new invention under the Lightning Process.)

One wonders how Phil Parker has managed miraculous cures that have eluded psychiatrists using the exact same treatment.

In fact in the CBT group 52% of patients reported feeling the same or slightly worse, and 6% reported feeling much worse. Overall, in the groups that excluded patients with depression - the London ME group, physical functioning improved less than 5% over baseline SMC. (Lancet.) That is not an effective treatment at all. Furthermore post-exertional malaise was only reported by just 63% of the control group at follow up, therefore 37% of patients cannot possibly have had ME/CFS. One wonders if you as against real science as the psychiatrists that have damaged so many people with ME given your views.Objective evidence is the only real science, something that the PACE trial refused to use - actigraphy, treadmill tests, cytokine profiles, hours actually worked - instead adopting questionaires and subjective nonsense.

Additionally your piece is full of serious errors and false statements. Phil Parker is not an osteopath, he is no longer registered as his claims of cures are illegal under British Ostepahthic Association rules. The PACE trial did not report any cures, or indeed significant improvement. The mean benefits were less than 5% in physical functioning in the London ME group. The rate of depression in the PACE trial was so high that the only conclusion that can be reached is that those with depression felt moderately better on CBT and GET. This of course we know, CBT and GET are proven treatments for depression. Lastly, Emily Rantzen has now reported that she was "faking" her recovery in 2006 and that she actually "feels infinitely better" now she has discovered she has coeliac disease and not ME. I really hope your previous articles were not as highly flawed as this one.

I’m sorry you were ill, and equally sorry that you believe that you were made well by such an unsubstantiated scam such as the LP. But to publicise your story is an utter disgrace as it gives support to something that is completely unproven, and indeed proven false by medical trials and medical evidence. Just because you "feel" you have been cured by this scam does not give you the right to claim that you have as that is to the detriment of many thousands of sick and very vulnerable people."

My PS: Please remember that anybody who claims to be cured by the Lightning Process, either was spontaneously cured or more likely didn't have ME in the first place.

3 comments:

Anonymous
said...

well let's just hope that you never get better from your ME 'm', otherwise people will accuse you of never having it also. I find it disgraceful how you can judge whether someone was ill or not. Surely it doesn't matter, the main thing is Patrick is no longer struggling with the illness he had.

I think you miss the point, anonymous. Although your venom is clear to see in your "hope" that another would not get well.

The point is that it is reckelss to publicise nationally a claim to something works knowing full well the affect it will have on people so desperate to get well. Especially when it is riddled with false statements as it was with Patrick's piece. Patrick piece was nothing more than an advert for the LIghtning Process, something which is despicable given that Patrick is a friend of Parker. Favours for friends???

Parker is well known for getting his friends to post false and misleading claims that the LP works, in reply on his Facebook page Parker even said "TOP BANANA" to someone that claimed "if I had a dollar for every time I have done this;-)" Is this a joke to these people!

Furthermore Patrick is a very disturbed young man, he was beaten almost to death only a few years ago and admits he suffered from severe post traumatic syndrome, a condition that would exclude him from a diagnosis of ME by most International criteria for the disease.

The sad part of the story is that Partick was diagnosed using inappropriate Oxford Criteria and now has been scammed twice. Once into believing he has ME and one into believing he doesn't. I just hope his belief (as that is all it is) doesn't fail and his post traumatic experience returns in full force.

"Plenty of people are still dying of diseases which other people do not believe." (Dr. M.N.C. Dukes).CBT and GET for ME: "There is no nonsense so gross that society will not, at some time, make a doctrine of it and defend it with every weapon of communal stupidity."

Robertson Davies

THE NICEGUIDELINES BLOG VERSUS THE NICEGUIDELINES

These are NOT the NICEGuidelines. This is "The NICEGUIDELINES BLOG." What are the differences:

The NICE Guidelines are biased publications based on the GOBSART (Good Old Boys Sitting Around a Table) approach.

This Blog however is not only evidence based but also uses critical reading to judge papers and articles. I also use common sense and listen to others. And finally I read both psychiatric and medical evidence and opinions from around the world to come to a conclusion.

I’m not sponsored by anybody or paid by whatever company as seems to be the norm with many psycho people who publish the same article almost on a weekly base.

So if you value an opinion, formed as a result of participating in many ME activities, for example being bed bound for years, you have come to the right BLOG. All these activities have allowed me to form an opinion as a Doctor and as a Patient. And that is important as the voice of the latter is discarded by many including NICE.

If you don’t read this blog, you will miss out on “accredited” medical education. If you do read it, you may actually become a doctor who doesn’t stop thinking or forgets to ask critical questions. Many good things, including satisfied patients are at your command.

So, if you arrived here for the straightforward GOBSART approach, I will disappoint you. If you are interested in forming your own opinion about ME, and other interesting things, read on!

About Dr. Speedy.

I am a Family Physician or GP as it is called in Australia or the UK. I am also an ME patient unfortunately. Bedbound that is. So at the moment I’m in private practice so to speak. I’ve got only one patient, ME, or is it me?

I graduated as a doctor a long time ago, and I am the founder and editor of The NICEGUIDELINES BLOG, an internet based ME BLOG that is devoted to critical reading and cheering you or ME up.

I have the following conflict of interest: I would like to get better and see that the wasting of public money on CBT (talk therapy for a neurological disease, really helpful) and other silly therapies for ME stops, and will be used in better ways.

My goal has always been to help, and if possible, cure patients. With this disease you will soon find out that many psychiatrists and psychologists are only in it to make money and get their name in the spotlight. And what happens to and with the patients is irrelevant.

I stand to benefit both mentally, physically and also financially if this silliness would stop, and I would get my health back, and I can go back to work and have a normal life again. Please evaluate my postings with this in mind! And remember, there are also (lots of) psychiatrists and psychologists who haven’t switched their brain off.